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Sunday, December 29, 2013

Our meetings had come to an end. Every last question, answered. Dave and I decided we wanted Aviana's last days to be just the four of us. Our Hospice team was the best. They would call and check in - see how we were doing? How Aviana was? But also, ask if at any point we'd changed our minds about wanting to be by ourselves. During these phone calls we'd talk about how things were progressing, and ask any further questions.

One night, I was talking with our Hospice nurse, Beverly, who happens to be one of the most spiritually nurturing people I will probably ever know. We were having one of our normal conversations, but towards the end, she said something, which in one sentence, unwound every bit of the together I was. The words were so painful they inhibit my memory from now forming the exact order. As I attempt to recreate, I'm filled with gratitude in knowing they were delivered from the gentlest heart, and loving voice.

"Jen, you and Dave can put Aviana in anything you want to send her home."

I lost it. I couldn't breathe. Never once had the single thought crossed my mind. With tears pouring without end, my gaze shifted towards Dave. He had our beautiful, withering girl wrapped in his arms. In his hands, a book he was in the middle of reading her. As I looked on, the phone beside my head, I wanted to freeze time - to spare them from what my ears had heard. I wished to un-hear myself. I felt we had come so far, but as I looked at the two of them - I knew we had much further to go. I could already see the words written on the page. I knew it would be one of the single most difficult in our story.

We held Aviana. We cried for all this meant. For our past, our present, our future. For everything - really. This moment. The symbolic nature of what we were about to do was forcing us to collectively come full circle. Thoughts were rampant. The anticipation and excitement of meeting Aviana for the first time in Guatemala, especially after receiving 11 months worth of pictures. Finally getting our hands on this real child - our child. Dressing her in the first outfit we'd brought for her. Giving her a bath for the first time. Styling her hair as we wanted to for the first time!

In one painstaking moment, all our firsts were spinning around and looming down as lasts. Round and round we went. We were edging closer to the threshold, preparing to cross. The memories, flashing. Happy/sad. Smiling/not. And the tears, oh the tears. They were flowing, and not.

As we looked at each other, we shook our heads in disbelief by the heart wrenching decisions we continuously had to make. We decided it would be better to pick an outfit and place her in before she died. We would keep her in this chosen outfit, so we wouldn't have to change her afterward. We gave her a bath for the very last time - washing all her beautiful, long, hair for one last time. We made our famous, but last 'Avi-ritto' out of her and the towel. We laughed as we always did, but then. . . cried as we held her extra tight. We decided on her pure white dress. She always looked like an angel in white. I did her hair, and when it came to the color of bow, we picked purple because that's her Nana's favorite color. One of my best friends, Jen, brought her the most beautiful cross necklace, which completed the whole outfit. The moments were extreme, but beautiful. Wrenching, but loving. And Aviana, well she took our breath away.

Very few knew. Most had no idea. Those who happened to see Aviana prior, probably thought she was merely a beauty in white. In the majority of our pictures from this time, she's wearing the dress.

At the time we were told we could put her in the outfit of our choosing, we were also told to expect her to go within 24-48 hours. As you know, Aviana had other plans and continued far longer. We finally had to wash her dress. In the meantime, we of course decided on a Halloween outfit. During that time, she took a turn. One look and it was was obvious - she was much too comfortable to change back into her dress. We knew it would be harder for us in the end, but her well being was of most importance. It seemed all too fitting for our girl to go in a Halloween outfit.

Dave and I believe once someone dies, their spirit is gone and their body is a body. We respect that body, but just as we thought, it was more difficult for us to change her back into the dress. We managed okay though.

Wrapped in her soft, polka dot blanket, we handed Aviana over to the two gracious men in our front entry and watched them lovingly carry her down our walkway. They got into their van, one in the driver's seat, the other holding Aviana while putting his seat belt around the two of them. Down our road they drove.

We were lucky enough to have a wonderful Hospice social worker who made a request for a two person transport and a mortuary who had never once heard of this, but wanted to do anything and everything to make it easier for a family who was about to lose their 7-year-old little girl. The people who make the world a better place never cease to amaze and inspire me.

The way we chose was like the day of the accident. I felt it would provide closure for hearts, which could never before truly find any. I watched Aviana's vibrant being toddle down that walkway and drive out of my life once before. And now, we watched her leave our lives for the second and last time - at least physically. But this time, she was off to once again be that spunky, sweet, glowing, grinning girl she was meant to be!

20 comments:

Oh Jen, you are amazing. What a beautiful time. Your family is always in my thoughts. I check on a daily basis for an update. Hoping and wishing for comfort and peace for you all. Avi was so blessed to have you as her parents. What a blessed family you have.

Knowing her, knowing you, knowing Nana.....gosh Jen, you are SO strong and have such a way with words. What a subtly beautiful photo of Avi in the white dress. I think of you all each and every day and seeing Avi's butterfly on my fridge every morning reminds me of her, her spirit, your spirit, your strength.I wish you nothing but continue memories and stories of your sweet, beautiful girl as the New Year is upon us.This year....I will run for Avi and as I do I will picture her running with Kama in that beautiful white dress =)

Jen, I feel such sadness when I read your post ,yet some joy in knowing you were surrounded by people that gave you comfort and supported you in all your decisions you made with Avis care,up to the very end.Every picture I see of Aviana , I'm in awe, she has such an angelic look about her. Wishing you and your family lots of love throughout the new year but most of all peace knowing that Aviana is one of Gods most beautiful angels that touched so many ,because you shared her with us. Love,XOXOCindy in nc

You are a wonderful mother. Dave is a wonderful father. Ya'll are such wonderful human beings. I wasn't online but I was thinking of you and your family during the holidays. Avi looks so sweet and beautiful in her dress. I love you!

I've been trying to figure out what to say to this post. It hit mom like a ton of bricks. It haunted her for days. Your way of weaving simple words into a rich tapestry filled with color and emotion is unlike any other. The love, strength and togetherness just shines right through like a soft spotlight; very clearly there but not blindingly annoying.

We all love you so much and I'm so damn PROUD of you both for listening to Aviana and letting her have the final say. I can't begin to imagine how you felt watching that man drive away with her yet like you said, her body was being driven away but her soul was already free. Did you feel any closure?

I too have no words. I was reading this post on my phone, sitting on the couch with my family, when I read how her body was wrapped in a blanky, and so caringly taken, and I started sobbing. It's taken me days to be able to comment. These details are heart wrenching, and how you are able to express them is so beautiful.Much love your way.

Sorry computer keeps freezing, on the jai mcmath case. It won't let me go back on correct, I meant jahi. I feel her parents are wrong. Her case is sooooo severe but I'm not in her shoes so even though I think she's in denial thinking with her heart not her brain, I'm spurious to know what you think, you're much much informed than I am to speak on it. Thanks and wishing you the best always :)

I feel deeply for that family. I believe it takes everyone at their own pace to come to terms with something so traumatic. I understand they are grasping at every last straw possible and don't want to let their child go, no matter what. They are trying desperately to focus on the people who are giving them hope, while shying away from the ones who are giving them anything but.

Every family is different under dire circumstances, and I'd venture to say more often than not, when you're in it - you never know how you will act completely…even when you thought you would.

For our family, quality of life is everything. All of Aviana's CT scans were looking horrific. We were not going to continue with her life. She was not brain dead, but still it was all bad. Still we were not going to continue as for us…that was no life for her. They were trying to get her stable enough to complete an MRI. They finally did. We thought it would confirm further what the CT scans were showing. We thought we were going into the family meeting to let her go. We went in and her doctors said the damage wasn't what they thought it would be. I asked for a scale of 1-10. The UCD doctors said the damage was a 3 and we needed to continue, to give her a shot, so we did. They put her skull back together and sent us to Kaiser. The Kaiser docs took one look and said her whole brian was stroked (excluding brain stem). Still not brain dead. We trusted UCD more and continued. Once we knew she had no quality, we knew what we had to do once again….for our family. This was no life for Aviana, she was a mere shell of who she used to be, and could not interact in anything.

Every family is different, what is acceptable. The amount of closure they need. For Jahi, this may be the time they need for closure, to come to terms. I feel so very, very, sad for all they have been through and all they will continue to go through. With each new article…my whole heart goes out to them. It's the hardest thing to let your child go…no family should have to…so however they are managing - so be it. It's their way of getting through a rough situation. Jahi is okay. Let them be too, if this is the way they choose - so be it. Peace be with them ❤

The way you care for Aviana is evident in every little moment you have ever had with her. Knowing you took such delicate care of every tiny detail of her last moments to make it precious, special and blessed... well, I am in tears and don't have any words to say. Aviana will always be so very lucky to have been with her mommy and daddy until the very last moment... no detail overlooked. Loved every millisecond of every minute.